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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Your experience with Revlimid?

by mikeb on Wed Nov 11, 2015 4:13 pm

Hi debbiew,

I took Revlimid as part of Revlimid, Velcade, and dexamethasone (RVD) induction and consolidation therapy before and after my stem cell transplant (SCT) in May 2013. I also have been taking it alone since September 2013 for maintenance therapy, except for a 2-month break during that time. I'll only talk about what I've experienced during maintenance therapy because it's so hard to separate out the effects of the other drugs during the earlier phases, as Nancy mentioned for herself.

I began at a 10 mg / day dose, then that was upped to 15 mg / day after I did well with the 10 mg dose for a few months. Then after about 6 more months it was dropped back down to 10 mg / day. Then after another year or so, it was stopped for a couple of months. A couple months ago I started again on 5 mg / day with 3 weeks on and 1 week off per cycle. Previous doses had been everyday, no off week.

At various times I've had the following side effects:

  • Low white blood cell count (reduced dose from 15 mg to 10 mg to deal with this)
  • Low platelet count (got Neupogen shots when this count was extra low)
  • Diarrhea (Imodium handled this, for the most part)
  • Muscle cramps in legs and hands (drank mixture of equal parts vinegar and water to loosen cramps; tastes so bad you forget about the cramps ;) )
  • Slowed heart rate, which led to several fainting or near-fainting events (stopped Revlimid for a couple of months and then started it again but at the reduced dose of 5 mg / day 3 weeks on / 1 week off, and that seems to be helping)
Looking at this list now, I'm halfway wondering why I'm still taking Revlimid after encountering these problems. But I've had such an excellent response as far as myeloma suppression goes that my doctor and I want to keep hammering it as long as we can. And these side effects look worse when I talk about them here than they actually have seemed to me when I've gone through them.

Mike

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: Your experience with Revlimid?

by TerryH on Thu Nov 12, 2015 11:31 am

Debbie,

All myeloma treatments have some side effects. Some also work better for some patients than for others. That's true for newly diagnosed patients, but particularly so for relapsed patients, where a patient's treatment history will influence how they respond to different treatments.

These days, Revlimid and Velcade are probably the two most commonly used drugs for the treatment of multiple myeloma, at least in the U.S. (I'm not counting dexamethasone.) So you will see lots of discussions about Revlimid, and Revlimid-containing treatment regimens, here in the forum. Since some of them may give you some additional perspective that may be helpful, here is a link that should pull up most them.

This forum posting has links to discussions about other treatments and to discussions about specific side effects: "Useful links to existing forum discussions".

TerryH

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